Tuesday, August 12, 2008

the good, the bad and the ugly. well, i don't really know what the "ugly" would be here, but it's a catchy title, so i'm going with it.

i decided to post about asher's appointments all at once, saving us all some time. however, if you're like one of my friends, you've been going crazy (however imperceptably *wink*) waiting. well, the wait is over, my friends. here we go:

CARDIOLOGY (monday afternoon)
no echo, no ECG. they did these recently already, and they don't like to do too many tests. asher's weight is now 12.1 kg (a little over 26 lbs), though just how much of that is fluid and how much is him, i can't say. as for height, he is now at 79.5 cm (32"). that's quite a spurt: after his surgery in june, at post-op clinic, he was 75 cm. so he's gained almost 5 lbs in less than 2 weeks (can you say "fluid overload"?), but he's grown about 2 inches in the last 2 months! yikes! no wonder he can pull stuff off the bathroom counter now (yet another reason we keep the bathroom door closed. immunodeficient toddlers don't play in toilets. well, asher does, but he shouldn't. anyway...) ok, enough of the fluff, on to the meat:

liz was not impressed with asher yesterday. not that she should be. i can't imagine it's a good feeling to see a patient in congestive heart failure. and that's what this is. they can't understand why it's happening, though. yes, fluid overload, but... it came on so fast. we've been upping the volume of formula for a while now, and we've been going pretty slowly. but this came on somewhat out of the blue in the last week or so. sure, there were hints that it was coming (remember the trip to emerg when he was grey? yeah), but once it got going... well, let's just say that asher's reputation of crashing fast is well deserved. he was so short of breath during clinic. and while the colour on his forehead was better, liz said that his nose, mouth, hands and feet are blue/grey. she was also unimpressed by the puffiness around his eyes, and as she told him, "children your age shouldn't have folds around their ankles anymore." to which i replied, "what ankles?" she just kind of nodded reluctantly.

i asked if she had any ideas why this happened. she can't explain it, so we were sent for bloodwork. she wanted to check a bunch of things, but one of the main tests was to check his albumin levels. (your phlebotomy lesson o' the day: albumin is a protein in the blood. it's the largest molecule in there, and it's the part of the blood that holds water. if your albumin is low, there's not as much in your blood to hold in the water, so fluid just leaks into all the tissue of your body, causing puffiness, shortness of breath, etc.) well, it's now tuesday night, and i have yet to hear from liz, which means albumin is fine. if it were low, asher would have to be transfused, and then we'd get into that whole "CMV-negative and irradiated" issue, because of course asher can't have the regular blood products off the shelf. it has to be special. can he do nothing the easy way? i mean, seriously!!! anyway... albumin is fine, which means no transfusion. but, that also means... and, um, how can i put this? ah, this captures it nicely:
ok, so cardio was a roaring success. yeah, right. i checked out the orders for the bloodwork on our way over (you know me: hand me a piece of paper and i'm going to read it, regardless of whether it makes sense to me or not. this is how i learn too much, folks). and right at the top, it said this: REASON FOR TEST: HLHS w/ CHF & cyanosis. well, isn't that special. if you don't know what that means, thank the Good Lord. if you do, you might be vomiting with me right about now.

yeah, liz was right on friday. asher should be doing better than this.

and now moving on....

NEPHROLOGY (tuesday morning)
well, this is the "good" i refered to in the title. here's the deal:

asher's nephrocalcinosis, the calcium that has built up in his kidneys, is decreasing!!!! there's less in there! that's the miracle of HCT, my friends. this is what happens when nephro and cardio work together on a situation (back in march, asher needed a BP med, but he was still on the study drug, so they wanted to stay away from that same class of meds. so nephro decided on a diuretic, but since lasix would cause more calcium to build up, he consulted with cardio and they decided on HCT. the whole incident brought a tear to my eye and was, for so very many reasons, a dream come true. all you SN parents reading this know what i mean. sub-specialists never consult with other specialties. it's like there's no other organs but theirs. i'm not joking. so this was just beautiful.). so, yeah, less calcium means the filters are not as clogged, which means less chance of infection and better kidney function. that's right, folks, IT WAS ALL GOOD NEWS!!!!
but wait, there's more:


honestly, what am i going to do with all that time (other than cardio and CV surgery stuff, i mean, duh!)?! do you realize that we have never been able to go 6 months between appointments with any of asher's doctors?! this has never happened before, and to be honest, i'm still a little shocked. i mean, this just doesn't happen in Asherland! not that i'm complaining, mind you. honestly, i could have hugged dr filler when he said that... if i hadn't been lying unconscious on the floor! lol so, yeah. good news from nephro. yay!!!

so there you have it. the good, the bad, and i mentioned the ugly yesterday (which would have been my "wardrobe malfunction" during my meeting with dr a). so, that's it for today. i thought i'd end with the good news. oh, crap, i forgot one more thing from cardio. so i guess we're ending on a downer (again). sorry. but here it is:

liz wants to see asher again in 4 weeks. last time it was 6 weeks. now it's 4. weeks. not months. weeks. notice, the appointments are getting closer together. they don't do that because they like to see your smiling face. nope. means they need to keep a close eye on you. and, if you've been keeping track, asher's next cardio appointment is next week in toronto, and liz knew that when she said 4 weeks. so, average that out, and we're looking at 2 weeks between appointments right now. why does this feel so familiar? oh, right. it was like this pre-Glenn. the first stage. yup, wanna vomit. anyone else? ugh.

well, i think that's it for today. for real, this time. promise. and hopefully, i'll have nothing to report for a while. talk to you later. much later. ttfn.


Anonymous said...

Sorry to hear about Asher. I am glad that Liz is still there, what would we do if we lost her...
I hope that he doesn't get worse although I know CHF is "" worse"".

THinking about you all.
o.k. I am not understanding you wardrobe malfunction??? Did I miss something..???

E-mail me if you need to talk..


Tanna said...

Heather... Cardio bad news sucks...and not having an explanation or solution is worse(well no easy solution)
Yay for nephrology though right?

And post glenn visits get further and further apart? REALLY...
I'll be waiting for this... I hope you;re right...
You're in my thoughts, and if you need, we can get Yale and Asher together so Yale can have a "talk" with him. LOL... although hopefully not the other way around....